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Myths associated with Brain Death and Organ Donation in India

It is widely acknowledged that there is no greater gift than the gift of life. A single person can save eight lives after Brain Death (BD) by donating heart, lungs, liver, kidneys, small intestine and pancreas. Organ donation rate in India is only 0.8 per million population as compared to more than 30 per million population in most Western countries. Here are some common myths associated with organ donation.

Myth 1:

Brain death is not death.

In some patients with severe head injury or massive stroke, the brain dies but the heart continues to beat for some time, thus maintaining oxygenation to the organs. Brain death is death. Brain death is not reversible. In fact, when BD is declared, the death form is also filled, even as the heart is still beating.

Myth 2:

Diagnosis of brain death is complicated and expensive.

The diagnosis of BD in India is based on bedside tests performed by a team of four doctors and repeated after 6 hours. No expensive tests are required. Under the current rules, when a neurologist or neurosurgeon is not available in a hospital, any physician, anesthetist or intensivist, nominated by the medical administrator in charge of the hospital, and approved by the appropriate state authority, can be the member of the Brain Death Committee.

Myth 3:

Organ donation after brain death is illegal.

Organ donation is legal. The Transplantation of Human Organs Act 1994 provided for the regulation of removal, storage and transplantation of human organs for therapeutic purposes in India. The act was updated in 2011 and the subsequent rules of 2014 streamlined the process of declaration of brain death and organ retrieval.

Myth 4:

My religion stops me from organ donation.

No religion prohibits organ donation. Religious beliefs are a punching bag we tend to use as an excuse for poor organ donation in the country. Below are some relevant excerpts from religious texts:

HINDUISM:

“…….it is said that the soul is invisible, knowing this you should not grieve for the body.” Daan is the act of selfless giving. -Bhagvad Gita, chapter 2:25.

SIKHISM:

“The dead sustain their bond with the living through virtuous deeds”. -Guru Nanak, Guru Granth Sahib, p 143.

ISLAM:

“Whosoever saves the life of one person would be as if he saved the life of all mankind”. - Holy Quran, chapter 5:32.

CHRISTIANITY:

Sacrifice and helping others are consistent themes in Christianity, which teaches the principle of seeking for others what you hope others would do for you. Teaching of Jesus Christ:- “…. Freely you have received, freely give.”- Mathew, chapter 10:8.

Myth 5:

If I donate my organs I may be born without a kidney or liver in my next birth.

This ridiculous thought is easily countered by the argument that while getting rid of a part of the body surgically for a malignancy no such thought comes to mind! Then why the negative thoughts when it comes to doing something positive for someone else.

Myth 6:

Organ donation will affect my treatment leave the body disfigured? The treating teams have a mandate to spare no efforts in saving life and have no part to play in the process of organ donation. There is no disfigurement or mutilation of the body. A person who is BD perceives no pain. Organs are removed with the greatest care and dignity by a team of specially trained surgeons in the operation theater.

Myth 7:

Permission of the family is not required for organ donation and retrieval if I have a donor card?The donor card has no legal standing. At the time of BD the donor is on a ventilator and the family is required to take the decision. Making a pledge helps the family to make the right decision. Therefore, it is of utmost importance that at the time of signing up as an organ donor, one shares the decision with the family.

Myth 8:

Organ donation is expensive.From the moment a family says yes to organ donation, the billing is stopped. The cost of maintenance of the deceased donor, organ retrieval, transportation and preservation is borne by the recipient or institution or Government.

Posted by Dr. Avnish Seth,Director, Fortis Organ Retrieval & Transplant (FORT).

Organ donation: What we must do as a nation

Organ donation after brain death is poised for takeoff in the country. A felt need by the nation, increasing public awareness and a path breaking new legislation make for a heady cocktail which is ready to launch organ donation in India to the next level. We do not have to try and catch up with Spain, which has an organ donation rate of 36.9 per million population, but need to establish realistic short-term goals. The nation needs to accord priority to organ donation. Measures to promote deceased organ donation have to be introduced at the national, state, city and hospital level.

National Level

  • Aim to increase organ donation rate from the prevailing 0.8 per million population to 1 per million population by 2020.
  • Measures to increase awareness on organ donation: -
    • Chapter in schoolbooks for class IX / XI.
    • Brain Death and deceased organ donation to be included in MBBS curriculum.
    • Use of social media to promote organ donation. Donor stories and comments from recipients to be highlighted.
    • Sustained media campaign around the year. Earmarked funds for the same.
    • Religious / spiritual leaders to be approached for dissemination to grass root level.
    • Mention of organ donation in obituaries published in newspapers by donor families to be encouraged by providing suitable discounts.
    • Best practices in brain death and organ donation to be included in the accreditation process for hospitals, e.g. for NABH.

State level

  • Organ donation is limited to 12 states and union territories in the country, and that too mostly in the capital cities. All states need to to adopt Transplantation of Human Organs and Tissues Act 2011 without further delay.
  • All states to have at least one major hospital where organ transplants could be done. 95% of organ transplants in the country are currently taking place in the private hospitals at high costs. The common man still has no access to organ transplantation.
  • All states to ensure that there are sufficient number of ventilators in hospitals. At present only 10-15% of ventilator requirements have been met. When there are hundreds of patients kept alive on Ambu bags waiting for a ventilator, how do we expect brain dead patients to be maintained on ventilators for the purpose of organ donation. Asking for organs and tissues should be a routine part of End of Life care in a medical facility that has already offered the best possible health care to save lives.
  • Organ-pledging facility to be introduced at the time of making driving license in all states.
  • Ensure implementation of Transplantation of Human Organs and Tissues Rules 2014 (THOTR 2014) by all hospitals.
    • Brain death committee duly approved by appropriate authority, to be in place and updated. Teams from SOTTO could visit each hospital and update committees. Concept of SOTTO on wheels to take organ donation to the hospitals.
    • All brain deaths to be declared and recorded.
    • Mandated request. Families of all patients with BD with no contraindication to organ donation to be counseled and response recorded.
    • Monthly return from all hospitals to the appropriate state authority on possible brain deaths and the outcomes of counseling for organ donation. This will help build a national database.
    • All hospitals not having transplant facility to apply for Non Organ Transplant Retrieval Center (NOTRC). The application form, as per THOTR 2014, to be submitted free of cost to the appropriate state authority.
    • Receiving hospitals to pay compensation to NOTRC as per THOTR 2014.
  • Computerized registry for potential organ recipients to be established. Transparent and quick allotment of organs to be ensured at local, regional and national level
  • Organ-pledging registry to be linked with Aadhar card. Out of turn allotment of organs to individuals who have already pledged their organs.
  • Transplant coordinators, duly qualified and trained, mandatory for each hospital.
  • Transplant hospitals and NTORCs to be visited by team of experts to ensure best practices on organ donation are being followed.

City Level

  • Police and postmortem authorities to be sensitized for organ donation in medico-legal donors.
  • Liaison with traffic police for establishing green corridors for movement of organs.
  • Awareness drives on organ donation: celebrities to be involved; awareness runs and walkathons to be organized.

Hospital Level

  • The government needs to promote and implement organ donation related standard operating procedures in its hospitals so that the common man benefits from such activities.
  • Hospitals with a track record in promoting organ donation to be earmarked as Key Donation Hospitals (KDH). To help in implementing the national agenda including teaching activities related to organ donation.
  • Key Donation Person (KDP) to be appointed in each hospital. The individual, with reasonable seniority and interest in organ transplantation, to monitor all organ donation related activities.
  • Cornea donation to be encouraged. Families to be counseled for cornea donation in all fatalities where there is no contraindication to donation. Asking for corneas should become a matter of routine and gifting of tissues and organs a national habit.
  • Brain death committee in each hospital to be in place and updated.
  • ‘Declare All, Approach All’ approach to be followed for all patients with brain death. Brain deaths occur in up to 30 percent patients who die of head injury or stroke, but go unrecognized or unreported. Hospital administration to encourage treating teams to declare BD early to prevent deterioration in organ quality.
  • Donor maintenance protocol to be in place and instituted early so that the quality of organs is maintained while the family decides about donation.
  • Monthly return to the appropriate state authority on the number of possible donors, potential donors with BD, actual donors and recipients. Renewal of license for organ transplantation to be based on authenticity and promptness of reporting.

By implementing similar methods, known as the ‘Spanish Model’, a country like Croatia was able to increase organ donation rate from 2.7 per million to 35 per million population in 10 years. Recognizing organ donation as a priority area, earmarking requisite funds, sustained awareness campaign, training of transplant coordinators and appointing a Key Donation Person in each hospital achieved this feat. As the baton passes from the private sector to the government, National Organ and Tissue Transplant Organization (NOTTO) and related agencies must act like a mother ship guiding a flotilla, encouraging the current players to continue their work as they try to excel in the difficult playing fields of India.

Posted by Dr. Avnish Seth MD, DM ,Director, Fortis Organ Retrieval & Transplant (FORT).

Organ donation in India: Do we have a foot in the door?

Organ Donation Week is celebrated in the country every year from 6th August to 13th August. In 2015, Ministry of Health & Family Welfare declared 27th November as Organ Donation Day in 2015. The National Donor Day in USA is 14th February while the European Organ Donor Day is on 9th September. There is no uniformity in celebrating Organ Donation Day. But does it really matter? In fact, should every day not be Organ Donor Day? Perhaps, the aim of these activities is to increase awareness. But do these activities translate into actual donations? Are we doing enough? What are we celebrating here? The recent trend of looking down upon private healthcare and creating an environment of mistrust between the patients and doctors is not helping the cause of organ donation.

The Government of India launched the National Organ and Tissue Transplant Organization (NOTTO) in 2014. Laudable awareness drives have been carried out resulting in increasing pledges for donation and attempts are being made to develop a transparent and fair organ sharing system. However, there has been no significant impact on organ donation rate. No significant policy level changes have been made. It is estimated that up to 400,000 lives are lost every year in India due to end stage disease of kidney, liver, heart, lungs and intestine. Due to the efforts of a few NGOs, private organizations, champion individuals and more recently the Government, organ donation rate in India has increased from 0.05 per million in 2007 to 0.8 per million population in 2017. Over 800 individuals donated their organs after brain death in 2017, thus saving more than 2500 lives. Lot more needs to be done.

Private healthcare in India is much maligned. Even as the premier government institutions in the country, far and few as they are, struggle to provide quality healthcare to the citizens, no opportunity is lost to belittle the efforts of private institutions. There was a time, not so long ago, when we in India had no access to quality health care. As the influential and the rich made a beeline to go abroad for operations like cardiac bypass, joint replacements and organ transplants, the common man was left to die. And then private health care arrived. Pained at the poor working conditions and bureaucracy in government institutions, the second brain drain followed. Several good doctors left government jobs and joined the corporate world that offered better infrastructure and opportunities. Medical care that matched world standards was now available at a cost that was still 10 to 100 times less than the west. The world trickled into India for treatment and medical tourism emerged. Health insurance made its appearance to help people deal with the rising costs of quality care. It is good to remember that where we are today in healthcare as a nation is largely because of the private sector.

The situation is no different in organ donation and transplantation. More than 90% of the organ donations and organ transplants in the country are carried out in the private sector. Most states do not have even one government hospital where kidney transplant can be performed. For too long we have blamed the countrymen for not donating organs. Indians are altruistic by nature. Myths associated with fear of organ donation, largely on religious grounds have been set to rest by two decades of awareness activities. The actual problem lies at the state and hospital level.

Health is a state subject. Transplantation of Human Organs Act 2011 provides legislation for organ donation in India. However, only 21 of 36 States and Union Territories have adopted the law till date, limiting the implementation of organ donation activities. Other states have not even bothered to adopt the Act. As a result, there are no approved Brain Death Committees in hospitals and declaration of brain death for the purpose of organ donation is not possible. Organ donation should not be viewed in isolation. It is a part of the process of delivery of high quality medical care and ‘End of Life’ care. It is only when a family is fully satisfied by the treatment given to their loved one that they accept brain death and consider helping someone else by donating organs in their hour of grief. With less than 2% of GDP being allotted to health, one of the lowest in the world, it is no surprise that critical care services in our government hospitals are suboptimal. According to one survey, only 15% of the requirement of ventilators has been met in the country. When there are several patients waiting for a ventilator, how can one maintain a brain dead person for 24 to 48 hours to complete the organ donation process? The critical care teams in these hospitals, often understaffed, undertrained and underpaid, are not inclined to declare brain death and reluctant to go the extra mile to ensure organ donation. There is no uniform definition of death in India. While circulatory death is the norm, brain death is recognized only for the purpose of organ donation. When a grieving family is explained about brain death and possibility of organ donation, they say yes 30% to 40% of the times. The problem arises when they say no. The critical care team is not able to declare death on the basis of brain death and remove the patient from ventilator. This incongruity, besides wasting the scarce resource of ventilators, often demotivates the critical teams from approaching the family. Thus the required request spelt out in Transplantation of Human Organs and Tissues Rules 2014, that mandates counseling of families of all patients with brain death for organ donation, is often ignored. There is an urgent need to give the critical care teams their due as they do all the backend hard work while the transplant surgeons get the limelight. Perhaps it is time to consider an opt-out system in the country for cornea donation so that eyes can be retrieved for all deaths. Medico-legal hurdles should be removed for cornea donation as the procedure is unlikely to affect any investigation into the cause of death.

There is need for augmenting the pool of trained transplant coordinators who have the difficult task of convincing grieving families for organ donation. Trauma services leave a lot to be desired. The nation loses over 1,50,000 young individuals to road traffic accidents annually. Most of our ambulances are not equipped with ventilators and other equipment considered essential for resuscitation of victims at the accident site before transportation to a hospital.

There is not a single helicopter in the entire NCR to airlift the victims of hundreds of accidents that plague our expressways.

Scoffing at the work done by private healthcare providers and taking away the focus from the real issue of upliftment of government hospitals needs to stop. We have to learn to do the right thing and lead by example. Our leaders would do well not to encourage unrelated living organ donation in the country. Also, events like the recent shifting of 19-year old laborer by a costly air ambulance from one part of a state to another, ending up with transplantation of organs into an influential recipient, need to be discouraged. The government needs to create quality healthcare facilities for the common man. Even though the new National Health Policy promises a lot, it will take a long time to deliver the same to all Indians. Private players will continue to play a pivotal role and it is time that they are given their due and their contribution recognized.

We have a foot in the door and presently it belongs to the private sector. The Government needs to do lot more by way of legislation and implementation and have the important task of keeping the momentum going by involving all the stakeholders and experts. The push has to a collective one.

Posted by Dr. Avnish Seth,Director, Fortis Organ Retrieval & Transplant (FORT).

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